Pages

Saturday, March 12, 2011

There are other choices

Last Sunday I was downloading Autism podcasts on my Iphone and I stumbled upon the famous Deborah Fein podcast on "Autism and Recovery" .

In this podcast , she talks about indicators of "Optimal outcome" ( indicators being no cognitive impairment, resolving language issues etc and optimal outcome being to become indistinguishable).

And, four years ago, I remember evaluating R against each of those indicators

Desperately clinging to those that indicated that there would be an "optimal" outcome.

It seems strange today to think of how I clearly saw our life stretching ahead in front of us

Only two roads ahead of us

Road 1 : recovering from Autism and living happily ever after

Road 2 - not recovering and being en-route to Destination Desolation. A landscape is marked by broken marriage, ruined career and lost friends

As time passed it became clear that we would not be among the "recovered" families who go on to write the books.

Those books that as a newly diagnosed mother I read with such hope and urgency

But even while accepting that Autism would be part of our lives forever -the way I thought about it started to change

Aimee Mullins describes brilliantly on TED what I had started to believe was true

"Perhaps the existing model of only looking at what is broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself.. I think the greatest adversity that we've created for ourselves is this idea of normalcy. Who's normal? There is no normal. There's common. There's typical"

And so I started to look at my life, my child , and my marriage with own eyes

I also started to see that the road map I had been given was a faulty one

There was also a third road – that the first panic had not allowed me to see

A road where I see R becoming autistic and able, my marriage stronger, my relationships better and my life happier . All with Autism in it.

Autism is not a choice

But there are many other choices in life after Autism

Choices about the way we feel,

Choices about how it impacts our marriages and our lives

All the time I spend searching

All the time the real answer was not out there

The answers were with me all the time

In how I see things and how I feel about them

"The end of all our exploring will be to arrive where we started and know the place for the first time"

- Thomas Wolfe

Not to say that this third road is always easy

Sometimes I get a mini-panic attack -thinking of all the things we need to teach and all the time I have not fully used

Well said.. though I am still clinging desperately to option one and not able to let go. I know that even with all the best resources... which I do not have access to ...only a little less than half can truly recover. So The best progress we can have is really the only true goal. And yes remember that life and happiness are different shapes and colors.

I'm not sure that I would classify the impact on your marriage as a choice, since there's another person involved whose reaction you cannot control. It's difficult when your spouse chooses Road #1 regardless of your feelings.

Autistic and able. Personally, I think the third road is the best way to go, where we let our children lead, showing us who they real are all along the way. And I think that applies to all children, not just autistic or disabled children. Self-determination and the right to be who we are is important to all of us. It's essential.

This is my first visit here. Absolutely beautifully written. In the back of my mind I still wish for option 1 but in my heart I know that the third path is the only one that will leave us all fulfilled and accepting.

I'm so sorry it took me this long to get here from out there. Looking forward to following you on a regular basis.